same dosage two weeks in row and number falling.....

John
As an extremely experienced renal nurse my advice is see the nephrologist asap. You have haematuria, this needs investigating.
Auto immune diseases often affect the kidneys.
Also PPIs have been known to cause interstitial nephritis.

Blood in the urine does occur with ITP, but ITP does not cause protein in the urine. It's important to see the right specialists. A Rheumatologist for Lupus and a Nephrologist for protein in the urine.

i have a referral for a Nephrologist and i am going to talk to my family doctor about seeing a Rheumatologist for the lupus.

i have a copy of the urine results from the night a went into the hospital my count was 17 and there was protein and blood in the urine.

seems they just focused on the blood in the urine and didn't look into the protein part. unbelievable.

i have an appointment with the other hemo tuesday i am going to mention to him all of this.. SMH

i think i'm going to the emergency tomorrow and tell them. SMH

my eGFR was 94 with a count of 17
now eGFR is 93 with a count of 244 3months later

for my age the GFR is okay so if i have kidney damage it is minimal. still mad that they just over looked this 3 months ago. still planning to go to the emergency tomorrow and tell them. that usually speeds things up---get to see a kidney specialist faster.

The ER might still refer you to a Nephrologist in an office somewhere. They don't always deal with diagnoses like that. ER's tend to just deal with life-threatening emergencies.

yeah i know but when they book an appointment for me to see one i might get to see one faster than if i go the route of family doctor and he arrange it. also at least they will do a urinalysis and i'll see if protein is still in the urine.

John it sounds like a good plan to me, kidneys can be extremely fickle.

the thing i hate and i'm sure many will agree is that the sick person many a times has to be on top of all this medical stuff or else things could go sideways real fast.

if i have lupus nephritis and ITP at least by taking the prednisone you are killing two birds with one stone cause both of them can be treated with prednisone.

Yes, I have always used prednisone as a rescue for ITP, and now I carry it as a rescue for Lupus. For me, its a great short term emergency drug- 5-10mg will get my platelets up and clear Lupus symptoms. Temporarily its good- long term not so good. There are other drugs also that work for lupus and ITP.
And yes, you are right about having to know everything about your disorder. Sometimes you even have to know more than a doctor! good luck w the ER Hope you get an accurate diagnosis and proper treatment.

Good luck, John. ER's don't tend to work that way, but maybe you'll have some luck. Let us know how it goes. Did they check you for an infection?

Yes, sick people definitely have to stay on top of things. Many things fall through the cracks....been there!

well just came back from the hospital. urine is fine no protein or blood all other indicators for kidney function are good.

count went down though wednesday it was 246 and sunday it was 220. different lab but still 26 point drop in 3 +days.
i lnow i haven't been eating like a did when i was on the a high dose of the prednisone, normally i don't eat that much and as i taper i'm going back to that. last couple of days i didn't eat that much. still going to see a Rheumatologist and Nephrologist.

seeing my family doctor on wednesday to set that up.,

That's good news! Don't worry about the platelet count. If you tested it every single day you'd see drops and rises in counts. By the time you get the next one, it could be back up.

I really think your Hemo is jumping the gun about Lupus too. I've seen it happen many times. A Hemo is not qualified to diagnose Lupus. See the Rheumatologist though and see what happens. Do you happen to know what the ANA titer was?

ANA titer? no i was looking at the lab results and all it said was ANA screen....... positive that's it. is that weird?
to be fair to the hemo he didn't say i had it he said blood in the urine at a count of 17 is unusual that coupled with a positive ANA you may have lupus nephritis and he gave me a letter telling my family doctor to send me to a Nephrologist.
i forgot to tell him i was taking flaxseed oil- that might explain the blood in the urine.

An ANA titer is the result, kind of like the platelet count. A good titer is 1:20. If it's 1:80, they will call that positive but it really means nothing. If it's higher, like 1:320 or 1:640, there is a greater chance of connective tissue disease, so the actual titer matters.

ITP is only one symptom of Lupus, but the actual count doesn't matter. My counts were normal when I was diagnosed with Lupus and many people with Lupus don't have ITP at all. There are many other tests that should be run to confirm. It looks like you don't have Nephritis.....that would be a good thing!

just looked at the lab results again seems he did other tests that i've never heard of before.

chromatin... 6.3 high
ss-A52..... 6.6 high

ss-a60....>8 high
smrnp..... >8 high
rnp68....>8 high
rnp A ...... >8 high

that plus ANA postive
the medical decision support software......MDSS said i may have SLE or MCTD(Mixed Connective Tissue Disease)

this seems pretty bad
Mixed Connective Tissue Disease

Mixed Connective Tissue Disease is kind of a catch-all diagnosis if they can't make a definitive diagnosis. Sometimes a person does not meet the Lupus criteria so they will call it MCTD until a true diagnosis can be made. It's sort of an overlap of symptoms that can't be placed into any one diagnosis.

Do you have any physical symptoms like fevers, joint pain, muscle pain, neuropathy, feeling flu-like, rashes, etc? Try to separate any symptoms from possible steroid taper symptoms; they are very similar. If you don't have any physical symptoms, that's a good thing regardless of what labs show. Some people can go through life without symptoms and how you feel matters more than what the labs show. I was the opposite. I had horrible symptoms for a year and a half before my labs showed anything definitive. Many people have slight, easy to manage symptoms like Posey (so far) and others become debilitated. The first thing you need to do is see a Rheumatologist. Try not to worry until you do. Let him/her decipher the labs before you panic.

my knees are stiff been that way for at least 5 years other than that i wouldn't complain of anything.
i don't take anything for it either no real pain only when bending .

Well, that sounds really good, John. Physical symptoms are also part of a diagnosis and they matter a lot. Stiff knees could be due to many things. Age, damage from past physical activity, bursitis, etc.....If it's been going on for five years then it's nothing new. Your labs may have been that way for years and you just never knew it. Like I said, let the doctor see them and figure out if it's anything to worry about.

thanks sandi! i'm looking now for a good Rheumatologist.

hey does prednisone work on lupus like ITP ? meaning taking Prednisone calms down the lupus from attacking whatever-say kidneys- taper off and maybe the lupus goes into remission.

from what i've read the prednisone is what took care of the lupus nephritis but it can comeback once the prednisone is stopped just like ITP

I've taken Prednisone for Lupus for 12 years. It doesn't do much for me. I've also tried Solumedrol IV's which didn't do anything either. I've tried a few immunosuppressants (Imuran, CellCept, Methotrexate) and none have caused remission. It's not always that easy.

Lupus Nephritis usually needs high doses of steroids or even more potent drugs like Cytoxin.

you are right -it's not always that easy. what works for one doesn't for someone else.

well i saw the other hemo today number was 256. that's a high.
220 on sunday and 256 tuesday. i honestly believe it was the extra protein i added.
i was stuck at 201,206,214 for weeks then added protein went to 249. the 220 i wasn't eating like a did and actually missed dinner one day. so sunday night after the 220 i eat better and increased my protein from 1 scoop to 1 1/2 scoops.
30g to 45g. now he wants me to go to 5mg every other day. he wants to look at the antibody blood test results and will send me to a rheumatologist and kidney specialist also. so i'm going to keep my other hemo in the loop and stick with this hemo for a little longer. i know this hospital has a good kidney specialist not sure about their rheumatologists though.

Rheumatologists are hit or miss from my experience. Some of them don't seem to realize that Lupus can come on slowly. If a patient meets some of the criteria but not all, they dismiss the patient instead of monitoring them. My very first Rheumatologist dismissed me by just looking at me. He didn't do any blood work...he just told me that I was fine and said good-bye. By that point, I'd already had an elevated ANA and SED rate, ITP and a few physical symptoms. I fired him and found another one who did test and monitor me. Some of them think you either have Lupus or you don't. They don't consider that you might be slowly developing it since there are some red flags.

After I was diagnosed, I developed neuropathy. I think I was on my fourth Rheumatologist by then. I told her about it and she told me that I probably had MS or Transverse Myelitis, then she walked out the door. I sat there stunned. I then fired her because all literature that I had read clearly stated that neuropathy can be a Lupus symptom. How could she not know that?

The fifth Rheumatologist was in Pittsburgh at the Lupus Center of Excellence. Top Specialists there! They had studies going on for Vitamin D and how it affects Lupus. I declined the study because it was too far to travel to participate. What cracked me up though was that she never tested my Vitamin D. After seeing her for about a year, I asked to be tested and my level was very low. How on earth did that slip through when they had signs all over the place about Vitamin D levels? Then she screwed up another thing and I was done with her. On to the next one......

WOW!!! i can relate to that.

just did a week of every other day of 5mg and count is 242 down from 256mg but i wasn't eating as good that could be the reason anyway still good. one more week of every other day of 5mg and that's it doctor said.

question i noticed that prednisone made my hemoglobin number jump. before prednisone 128 one week of 75mg 155. why is that?

Prednisone can cause wacky numbers on the CBC, usually the whites are affected. I wouldn't worry about it.

well off prednisone starting today count was 251. got an appointment with rheumatologist to see if i have an autoimmune disease. most likely will see two rheumatologists just to see if they say the same thing.

John, just want to say that I was diagnosed with Lupus/Sjogrens this year and I was dreading the diagnosis. I was hoping they'd say it was "all in your head" or some kind of anxiety disorder. But really I feel so much better now with the diagnosis, much more in control. I hope you don't have Lupus or anything wrong! But for me, it is better to have the diagnosis instead of just feeling afraid and alone while I was struggling with unexplained ailments.

It took me over a year to get to a rheumatologist- I couldn't find a good one who would accept my insurance. I found a doctor 50miles away who was NOT accepting new patients. frustrating! But I kept trying and finally got an appointment. Then I was assigned to the nurse practitioner- I complained, I wanted the doctor. But the nurse has turned out to be really smart plus very thorough. She spent over an hour on the first appt, then a full half hour every time I see her. I had positive ANA 1:160 with speckled pattern, which can mean Lupus or Sjogrens. I'm getting Nplate for ITP, and for Lupus I take 200mg Plaquinil. And as I've said, I always have prednisone on hand. I take 5-10mg if I need to, usually just for one day with no taper. good luck with the doctors!